Guest series: Part 14 - Hide and Seek Intervention

“Welcome back! How did it go?” Heather bounces into the room and I am reminded this is the start of a 4-day string of night shifts for her. Tonight she is wearing hot pink scrubs and her hair is pulled back into a loose ponytail. She has her staple blinding white runners on and her disingenuous smile is stuck on autopilot as per usual. She is very nice and respectful of me and my body, but the fake expression of happiness is one of my pet peeves. No one can actually be that happy all the time. It’s impossible.

“I think I have an apartment! I need to confirm it tomorrow, but it was as perfect as I am going to get. Two beds, two baths, a big room-style kitchen that I can get in and move around in with my chair, and a decent-sized living area. There is a yard for Penny and it’s beside an accessible subway station.” I am beaming and my smile is genuine. I finally have hope of getting out of here.

“Nice! When would you get it? June 1st?” Heather straps a blood pressure cuff onto my arm and turns on the machine.

“Yup.” Before I can say more, a thermometer is thrust into my mouth.

“So you would leave in a week?” Heather looks up from the machine so I can nod. The machine beeps and I look to Heather for her to tell me my vitals. “BP is 134/82, O2 sat 98, temp 36.6 … heart rate is 100!” Heather’s smile fades and looks to me for the reason.

“I am in a lot of pain a–” I am cut off.

“Clearly you are in a lot of pain! Jenny! Why didn’t you say anything! Jeez, even your blood pressure is high for you! Jenny - seriously, you need to tell us when it gets bad!” Heather’s hands are flying and she is scribbling her findings on a paper.

“I know … I just had such a good time out of the hospital today and I know it was too much for me. I want to still be allowed to take Penny out and go on my short outings, so I didn’t want you to know how bad it was.” I play with my Penny’s ear and examine each golden curl that adorns it. I’ve been caught and I am too ashamed to look up.

“Jenny, you aren’t going to get better if you don’t tell us when you are in pain. You need to let us take care of you. You are in the hospital and you can’t ignore that. I am going to go get you a dose of breakthrough and bring you your muscle relaxers too.” Heather turns and leaves the room before I can respond.

I run my finger down Penny’s nose and scratch the little space between her eyes while she sleeps. She is so perfect and peaceful. I wish I could be so comfortable and trusting. I feel really guilty that I was caught. I thought I could hide the pain, but I should have remembered that she would be checking vitals and it would show distress.

“Take this. Go.” Heather bursts back into the room and dumps the pills into my lap. I put them in my mouth as Heather holds a bottle of iced tea up and guides the straw towards me so I can swallow. Heather pats the bed, gesturing that she wants to sit down. I nod as the pills go down.

“Jenny, I know this sucks. You’re 23, you’re active, you’re creative, you’re smart and you don’t want to be here. I know it doesn’t feel fair. It isn’t fair. You have a rare disease and you are really sick a–”

“It’s normal for me though.” I cut her off this time.

“No, this isn’t normal, Jenny. You have had bloody diarrhea every day since you got here. You are on high doses of steroids every day and you will likely have osteoporosis within the next few years and you will only be 20-something. You are in severe pain and on very high doses of very strong pain medications. None of this is normal.” Heather is leaning in and trying to make sure I truly take in what she is saying.

“Yeah, I know that, but I don’t need to be here and I just want to go home. No one has run a test or given me treatment. I can be sick at home too.” I shift uncomfortably in the bed and look to Penny for reassurance as I speak.

“We may not be testing you or giving you anything new, but you need to be here. You can’t control half your body. You can’t go to the bathroom alone or even dress yourself. You can’t even take your medications without help. I know this isn’t easy to hear but you have a rare, life-long disease. You are going to be this sick, and likely sicker at times, for the rest of your life. You need to learn your limits and learn how to take care of yourself now or the rest of your life may not be too long. I am not trying to scare you, and I know deep down you know all of this.” Heather pauses and we sit in silence for a moment. “Let us help you. Tell us when you are in pain or feeling worse. Let your body heal so that when you do go home, you are ready for it. You pushed yourself and now you are paying for it and that isn’t doing you, or anyone, any good and neither is denying it.”

“I know. I’m just angry that I am 23 and this is my life. I’ve been here for 3 weeks and I had to drop all my courses this term. I had to give up summer employment, too. This admission means I have to add another year onto my degree. That’s just what this event has done. This disease has changed everything for me. This isn’t the first admission this year - it’s actually the third. That doesn’t even count the twenty or so ER visits for IV pain management or IV fluids because I am dehydrated from the constant vomiting and diarrhea. This disease is like living with the flu. Every day. I am going push it. I am going to do more than my body can take. I don’t do it all the time, but sometimes I need to have moments where my Behcet’s Disease doesn’t dictate everything and anything I can or cannot do.” I am doing all I can to not cry. I have been crying a lot with this admission and it is always my goal to make sure it goes unseen.

“I am sorry you are going through this, and I am sure it is harder than I can imagine for you to lose so much to your disease. You have an amazing community of people who care about you, and with them you will graduate school. I remember you saying you want to be an occupational therapist, and you will be. You will be awesome at it because you have had these experiences. You won’t be able to do anything unless you take care of yourself, though. You are allowed to push it a bit sometimes, but you need to make sure you treat the pain and the consequences of pushing right away. You don’t deserve to be in pain.” Heather rubs my shoulder and pauses once again. “I will be back in an hour for another dose of pain medication, okay?”

“Yes.” I can’t say much more or else I will cry.

As Heather leaves, I lie back in the bed and pat my chest so Penny crawls up on me. I continue to play with her ears and stroke her face while I close my eyes to see if I can nap. I doubt it, because of how much pain I am still in, but it is nice to relax either way. I feel Penny’s chest expand and contract against mine and meditate on its rhythm. I now feel relief for being caught. I feel relief that I don’t need to be stoic anymore and I can just accept that it is a bad night and let Heather help me. Accepting help is so much harder than giving it.

Jenny Blaser is a young, Deaf and Disabled Queer who loves all things pink and butterflies. She is a chronic story teller who uses narrative as an act of resistance and reclamation of identity and experience. To learn more or to reach Jenny, check out http://fiestydeafanddisabled.wordpress.com/